I'll warn you now. This is a long post. I'm new to this all and just don't know what to do or think.

Over many years, I have seen my primary doctor for a variety of "little" things; depression, fluttering in feeling in my chest, confussion and memory issues (like not being able to remember common words or names of people I've known for years). Eventually, after having a day when my blood pressure was 90/40, I was seeing black when I stood up (even when I did so slowly) and my memory and confusion problems were starting to effect me more and more, I made another appointment with my doctor to go over everything in at once. I figured over the years, symptoms that I brought up one at a time may be connected and if I brought it all up at once it would be easier for the doctor to see something or be able to tell me they are unrelated.

I went to see my primary doctor, who I've seen for the last 8 or so years. I brought up the problems listed above as well as an eye issue I've had since I was a kid. My eyes roll up for a second or two and when they do, I can't change what I'm doing. I can think of something I want to say, but can't make myself talk or if I'm walking down the stairs, I just keep taking the same sized steps.

I have had problems with shortness of breath whether I'm exerting myself or not (and I am not overweight) and there are times that my legs itch so much that I just want to cut them off, even when they are not dry (inflammation perhaps?) And before I started taking anti-inflammatory meds, I would complain of pain throughout my body on a regular basis. I also mentioned to my primary doc that since high school I've been able to feel my abdominal aortic pulse (and can actually see it sometimes through my clothing), which I've read that CAN be normal, but a nurse that I used to work with told me I should have it checked out just in case.

He told me he wanted to run some blood tests, have me go for an MRI and and EEG. When I came back after all the tests were done, he said the MRI was good, but it did show some "thinning of the brain." He said, "That's normal with age... just not really YOUR age." I'm 29. He also said that the EEG showed some slowing. The test that really made him move forward was my ANA Titer IFA/Pattern and ANA Screen EIA. I was told I had Mild Lupus SLE and was referred to a Rheumatologist for polyarthritis and possible lupus.

The rheumatologist asked me some questions and I was nervous and felt like I was answering wrong. Even though I know it's not a right or wrong thing. He ran some blood and urine tests and when I finally called them two weeks later to have them faxed to me saw that there were abnormal results. The results had already been done for almost two weeks. A week later, after calling 2x's a day, the doctor finally called me back and told me that my labs suggested Lupus but his clinical finding didn't so he I didn't need to be treated for anything. He said I didn't have any findings of inflamation... I'm on an anti-inflammatory arthritis medication (which he knew about).

Anyway, here are the results that from my research seem to point to lupus as well as some symptoms. I'm considering seeking a second opinion. Any thoughts?

Extremely dry, itchy, gritty feeling eyes. Constant feeling of dry mouth. (Rheumy suggested lubricating eye drops and to chew sugar free gum when I got to bed... and keep it in my mouth while I sleep - which technically has helped). He suggested Sjogren's syndrom but my labs were negative for those types of antibodies.

Urinalysis:
Bilirubin: Negative - Confirmed by Ictotest (I thought this seemed like a good thing, but it was highlighted by the lab as abnormal)
Ketones Urine: 15 (1+) mg/dL
Leukocyte Esterase: Trace
WBC Urine: 0-5/hpf
Squamous Epithellal: Many
Bacteria: Few
Mucus: Present

I do have a light blush across my cheeks and nose that never seems to go away. I also have what still looks like tanned skin on my back from a moderate sun burn from early June. My wife thinks it looks like I've been scarred by the sunburn. I'm constantly tired, have a hard time falling asleep if I don't take 3mg of Melatonin (that my primary dr suggested) and even when I sleep, I either wake frequently or wake up knowing that I didn't sleep well. I am also allergic to sulpha drugs, which I've read many Lupus patients are as well. I still have a lot of confusion. I read in another post of a woman who says she frustrates her husband because she says things like "Could you hand me the thingy that does that thing over there on that thing?" That is me!! I want to go to Law school, but even though the sample questions for the LSAT look simple to me, I fear I won't be able to concentrate enough to answer them. My hands get so cold just walking through a store that I have to have my gloves on because they hurt.

I apologize again for writing so much, but I'm so frustrated. I feel like the rheumatologist (who said, when I asked how many people have a positive anti dsDNA don't have Lupus, "Not many. Not many." and who said that I shouldn't be treated for lupus but told me to be careful of the sun because people with Lupus tend to have problems with sun exposure) just doesn't want to have to do the follow-ups that a lupus patient can require. It already takes 6 months to get in when you're new and 8 months for a follow-up with this doctor. When I asked the rheumy about the ketones he said it was just because I hadn't eaten (I had a doughnut for breakfast and the test was at 11:30am). He continued that the billirubin is part of a natural process (though I've read it's not supposed to make it to the urine. He also told me in the appointment that my joint pain was normal and everyone has it (I told him that sometimes it feels like someone is trying to pry off my kneecap with a tire iron. Is that really normal for everyone??) Oh, and I forgot to mention... at the beginning of the rheumy appt, he was reading my primary doctor's dictation. He read that I was being treated for Lupus. He said, "Lupus. Could be, but we'll just see." Which seemed a little pretentious to me.

I've read a lot of people's posts and teared up because I could understand what they are saying and their frustrations. Maybe my post will make someone else feel like they aren't alone.

Last edited by Wifeandmommy; 02-19-2009 at 03:03 PM.
Reason: Forgot a few things

Wife and Mommy,
I'm afraid I won't be of a lot of help...all this is new to me. I was told I had Lupus. I saw the Rheumatologist today for the first time. He said I had the symptoms of Lupus plus other things. He started a whole new battery of tests and told me to come back in a week.
If I were you I'd definitely get a second opinion .
BTW I have the can't think of words thing as well????

Hi, Wifeandmommy. Welcome! I felt bad reading your post, because I could feel frustration in your every line. Obviously I'm just a patient, so please read what follows in that light.

anti-ds-DNA: My understanding is that this is one of only two autoantibodies considered "highly specific" to SLE, the other being anti-Sm---meaning these are not seen in diseases OTHER than lupus. The criteria used to diagnose & classify SLE are a "sticky post" ( = permanent info post) at the top of the thread list; and you'll see that generally (meaning not always) at least 4 criteria must be met. I've also read in books that some people test positive for it WITHOUT "clinical problems". But---personal opinion here---I can't picture YOU in that category, based on what you wrote about how you feel, meaning, just not well.

URINE TEST, BILIRUBINS & KETONES: I thought if these turned up, that additional tests to determine WHY typically are indicated.

SJOGREN'S: I don't know how often---or if---people without the anti-Ro antibody are Dx'ed with this; but I have read that lip biopsy is the most definitive test. Plus I *think* anti-Ro is one of those autoantibodies that can wax & wane.

DOCTOR'S WORD CHOICES & SECOND OPINION: I'd be put off, too, by some of those "sage" comments! Worse, I'd be nonplussed to no end with how open-ended this doctor left your appt. & findings. It's like you were handed a shoe that doesn't even seem to fit---but with no way to remove it & replace it with a better fit, because the doctor seems so sure it fits & acts like he's all done.

I hope you do try another rheumatologist. And I hope you keep posting here. Sympathetically, Vee

P.S. What did your GP have to say about your rheumie appt. & the rheumie's "conclusions"? Anything? Have any advice for you, maybe some other rheumie in your area?

Hi,
I have been diagnosed with Lupus and although my Rheumatologist is very good I still have questions that I feel I can get better answers from through people like yourselves who actually have the same thing.

My questions (among many) is that if my kidneys are being affected by the Lupus and the medicines they have me on are affecting my kidneys what is the next step? And how fast does this progress once it starts affecting the kidneys?
Thanks!
...Ang

Thank you to all of you who posted back! VeeJ, I've read a lot of your posts and you have been invaluable. Even though in one aspect it sucks that so many people are and have gone through these issues with doctors (as if our symptoms weren't enough to deal with), I'm glad that if we all are going through similar experiences, this board is available.

I did make an appointment with another Rheumatologist. She did her fellowship in Internal Medicine and residency in Rheumatology both at Mayo Clinic. She is with the competing hospital in our town. Thankfully, my insurance who is through my employer (the hospital that the original Rheumy works for) is going to let me see her and will probably let me stay with her if I like her!

As for my PCP, I met with him on the 13th and told him about the appointment I had. He told me he still thinks I have Lupus and he was more than happy to send a referral to the new specialist, who I see on June 26th. I can't wait! I don't even care if she says "You have Lupus but it's mild so just stick with what you've been doing for now." At least it would be a diffinitive answer!

Thank you to all of you who posted back! VeeJ, I've read a lot of your posts and you have been invaluable. Even though in one aspect it sucks that so many people are and have gone through these issues with doctors (as if our symptoms weren't enough to deal with), I'm glad that if we all are going through similar experiences, this board is available.

I did make an appointment with another Rheumatologist. She did her fellowship in Internal Medicine and residency in Rheumatology both at Mayo Clinic. She is with the competing hospital in our town. Thankfully, my insurance who is through my employer (the hospital that the original Rheumy works for) is going to let me see her and will probably let me stay with her if I like her!

As for my PCP, I met with him on the 13th and told him about the appointment I had. He told me he still thinks I have Lupus and he was more than happy to send a referral to the new specialist, who I see on June 26th. I can't wait! I don't even care if she says "You have Lupus but it's mild so just stick with what you've been doing for now." At least it would be a diffinitive answer!

Ihear you fustration! My daughter had kidney involvemenent so after chemo treatments she is now on 50 mg prednizone. Last week the renal doctor said to drop it from 10 pills a day for two weeks then down to 6 pills ror two weeks and we would be back in a month . Then they got her tests back and her protein levels was had gone up to .6 so they said to hold her at 8 pills. Then we say her rheumatologist Friday and she is very concerned about her being on high levels of prednizone for long peroid of time. She wants to drop her to 30 mg and even do another infuion that is 4 consectitive days . She is far more aggressive and rather use a more aggressive approach. It is very hard because the renal doctors feel different. I don't know if I should get all new doctors ! I fell more comfortable with the rheumatologist decisions .

Well, I met with my new Rheumatologist yesterday. She went over all of my concerns (she had me tell her everything that I've ever gone to my PCP for) and explained what she considered to possibly Lupus related, what she did not and why. She gave me suggestions for those things she didn't think were related and also explained what we needed to do next as far as treatment.

She told me that because my ANA was so high and the positive of the dsDNA antibodies was at the level it was it indicated the presence of SLE. She explained that they've noticed that when there is a lack of the clinical diagnostic criteria but presence of Anti-dsDNA, usually SLE is clinically diagnosable in 2-3 years (of course this does not take into account how long a person may have had the antibodies before they were looked for in labs). And while I did not show a significant antiSM (antiSmith) she said that usually shows that SLE will be diagnosable in about 1 year.

She had more labs drawn (10 vials and a UA). She said that if my anti-dsdna is still up, that she suggests that I start on Plaquenil. The reason being that if SLE is in my future, it is better to start now as Plaquenil takes approximately 6 months to start being effective. If we wait until the SLE is bad and really, really needs treatment, it will be 6 months before I'll start feeling better.

I'm nervous about the medication suppressing:wave my immune system, but perhaps I'll feel better in the long run.

My next appointment is in 4 months (which is only about a month after when I was supposed to see the original dr again (I canceled the appointment with that guy :P).

Hi! I'm new here, too, but I do have something to add. When your eyes roll back into your head... that sure sounds like a simple partial seizure to me. A person does not lose consciousness during this type of seizure. I suggest that you research this. I have these too, and I have the same memory problems that you described.

Hi! I'm new here, too, but I do have something to add. When your eyes roll back into your head... that sure sounds like a simple partial seizure to me. A person does not lose consciousness during this type of seizure. I suggest that you research this. I have these too, and I have the same memory problems that you described.

1tiredmama

Thanks 1tiredmama (good name, I can relate! :P)
I see my PCP next Friday and I think I'm going to talk to him about me seeing a neurologist. Besides the eyes, I've been taking note that when I'm extremely stressed, I get an occasional tick of my shoulder or hand on the left side. I've also been doing research on partial seizures and have read that deja vu (thinking you remember something that you couldn't have seen before) and jamais vu (not remembering things you know you should) are types of partial seizures too and I have those all the time.

Welcome to the boards. I think you will find them helpful both for information and because you will realize you are not alone!

Wifeandmommy, 'tis good to see your update! Your new rheumie sounds like a great choice, with her coherent explanations, careful questioning, etc. I'm sorry she confirmed the Dx---but so glad that you're getting proactive help.

In his hardcover, Dr. Daniel Wallace devotes a whole section to Plaquenil. He actually says it's NOT an immune suppressant, unlike the other 2 categoreis of DMARD's (= steroids & flat-out immunosuppressants). He describes how it alters the acid/base ratio in our cells, which somehow discourages production of unwanted autoantibodies. Something like that, anyway... Most libraries have his book. (And Dr. Robert Lahita is another excellent lupus author.)

Plaquenil has helped me a LOT. Despite many years of symptoms, it kicked in surprisingly quickly & thoroughly. May you do this well or better! I'm so glad you're in better hands. Also, GOOD LUCK with your neurology appt. Hang in there, OK? With my best to you, Vee

I was in a very similar situation 24 years ago. It took a second opinion to confirm that I had lupus. I had no clue what lupus really was at the time just that my cousin also had it. I have had my current rheumatologist for 10 years now and he is extremely compassionate. I just fear he will retire. Dr's are hard to find and for me hard to trust probably like alot of people with lupus. Good luck and Im sorry your going through so much. Just remember you need to be your own advocate and if you cant at times have someone go with you to do so. Another good thing is to write down all of your symptoms and keep a log of it. Sometimes I have forgotten to tell the Doc things and I really should have. It means that I should have had changes in my meds if I would have remembered. So yes I still write everything down when I see my rheumy, which by the way is every 2 months. Good luck